Just thought I would share my story

[A[I]R]

I have had Crohn's Disease (an inflammatory bowel disease) since I was diagnosed in October 1996. I have always had stomach problems including going to the toilet up to 20 times a day!! I had tried every possible treatment for my condition and while it temporarily eased the pain the condition never was completely "cured."
The treatment I have tried: Mesasalazine, Salazopirin, Salofalk, Colifoam, Cortisone at one stage at 110mg, Imuran, 6-mercaptopurine, Infleximab, Colazide. In the last 10 years since being diagnosed. However, this last year has been the worst/hardest for me.

I went into hospital on August 17 for a procedure because my stomach was blocked and I needed to have ballooning to open up the narrowing in my bowel. The doctor also injected cortisone into the problematic area.

After coming out of hospital on August 17, I spent the night recovering at home. I went out most of the Saturday (following day) and felt great. Woke up during the middle of the night at approximately 3.30AM shivering and feeling extremely cold. I turned the heating on and went to bed. I woke up at 10.40 the next morning and went to my parents room and they went to get the thermometer. It had a reading of 40.5C they called the Doctor who said take him immediately to Emergency. I went there and had to have a CT scan and drink this aweful tasting contrast die. I waited until 4.50pm to hear the results.

The results came back and it showed that my bowel had torn and as a result gas had leaked out of the bowel walls and into the rest of my system and that was the cause of the temperature. They said that it is extremely dangerous to leave it the way it is and they would have to operate on me. I had no choice, they explained it would be either operation of 48 hours to live, which obviously neither the doctors, nor me or my parents would want. I had the operation at about 7.50pm that night.

As a result of the operation I am left with a temporary stoma bag which is attached to my stomach, which is where the waste temporarily goes. Until I am rejoined in 6 months time. It has been extremely difficult for me, especially myself getting used to my new body.

I was in hospital for 18 days and am still recovering, I am just starting to go for small walks and have been out of work since the week of August 19. Almost a month recovering.

I am only 18 and have already been into hospital 14 times and counting.

I have come here looking for people in a similar situation as it is kind of embarressing to talk to with friends. Not sure if you all feel the same way or not. But I think I have had my fair share of suffering. Not to mention my wisdom teeth are coming up and are impacted and are causing pain but the doctors said I can't have them removed just yet as I can't deal with more pain and would be unable to have any strong pain killers such as Panadine Forte or Tremadol etc..

 

[Mazen]

Hi. Sorry to hear how much you suffered from this disease. But I'm sure that you will find great support on this forum, and don't hesitate to ask any question you have no matter how embarrasing, as we have all been there some way or another... wish you the best of luck.

 

[A[I]R]

Thanks. According to the doctors they said the rest of my bowel is healthy as they cut out all the problematic areas. I just hope once I am rejoined I will not have to suffer anymore. According to the biopsy results, the Crohn's had attacked 4.5 of the 5 layers of my bowel. So if the doctor on the Firday hadn't injected the cortisone it may have come later and caused me even more pain as they said there was an absis (don't know how to spell that) developing which could have caused serious damage!

 

[Kev]

Hi AR... Welcome to the forum. Here's wishing you a speedy recovery from your op. don't fret about talking freely on here... we are all in pretty much the same boat and terms & phrases that would cause embarrassment outside the forum are pretty much just our 'in' crowd lingo here. As far as this disease goes, I often feel that we get more than our fair share of suffering... but then I look around at other people who are far worse off, and would gladly change places with us in a heartbeat. True!
Anyway, once again welcome. Hope you feel better soon. And keep us posted, OK?

 

[Sojourn]

Hello, welcome to the forum. Good to hear you got into the ER in a timely manner as a result of your bowel tear. That sounds like a dangerous situation. I think you'll find a lot of good support here and information.

I currently have a fistula leaking out of my stomach onto a bandage which I have to change twice a day. They were unsuccessful attaching a stoma to it. So I know what it's like having waste leaking out of the body. But it's supposed to be healing and is draining less now.

It sounds like you have a good attitude despite all you're having to deal with it and that's half the battle. So stay strong and wishing you a speedy and successful recovery.

 

[tonya_n_ky]

:welcome:

 

[hanaa al baydany]

i amm realy sorry that u passed throught all this. but quip u with forum becouse realy i feel that have not new friends but new family that share some how the same problems.take care. don't hesitate to ask any question.

 

[A[I]R]

A little update.

Since the original post I have had a reversal followed by a J-loop (temporary ileostomy). Then last week I had the closure of the ileostomy. I am still in a lot of pain from the surgery so I am quite constipated from all the panadene forte. Besides my cramps I am happy to have my bowels functioning properly. I cannot begin to tell you all how appreciative I am that I have my body working again.

However, looking back the time with the bag was essentially pain free for an entire year. Not a single worry (apart from the occasional leaks). If only I was a little older, I would probably not go through all this again and just keep the bag.

Would like your thoughts.

 

[Kev]

Well, I hope your pain period is brief... and that any painful memories pass fairly quick as well. As to hindsight, the nasty part of it is that's its always 20/20 when looking back, and there is no such beast as 20/20 foresight. Give yourself time to get past the recovery phase... then try to look at it in full perspective. It may turn out that the physical cost of the surgery is someday seen as a small price to pay for the 'loss' of the bag. Only time & you can tell.